It seems so wrong to have our life going on as it ever did, while Ellie spends all her time in the ICU, missing out on so much. Snow, for example. She has never seen snow, experienced the cold, marvelled wide-eyed at the sight of white flakes falling from the sky.
I remember Jakob's first snow experience like it was yesterday, yet it was over three years ago. He stared up at me, blinking, wondering who was placing icy kisses on his face.
I am trying, so very hard, to be optimistic about her next assessment. Every ounce of hope I have is being thrown into believing she has grown. She has to have grown enough. I desperately want her to be able to experience spring, summer. Beaches, swimming, sand, all those things you have to avoid with a trach. No camping, no trips away, no crowds. She has to have grown enough.
We spent the evening with Ellie, Jakob watched a movie, then played for a while with a pink bus, and then colored on one of those magnetic doodle boards. Ellie was content to be passed between Jason and myself, happy to roll around on the play mat, to watch her big brother playing. She dazzled us with smiles, and made us laugh with her funny faces.
I fed her, changed her, danced with her, and sang to her. Tonight was the first "bed time" I was present for, in too long. Most of the time, I simply can't keep Jakob up so late, but tonight we made an exception. Ellie is very attuned to her schedule, and she knew it was her last feed of the day. She knew that it was almost bed time, and tonight, when she knew the day was done, and all that was left was to sleep the night through, she didn't resist my cuddles, she didn't cry as I set up her BiPAP, she was beautifully calm, and ready for rest.
If only she were home.
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